2nd European Forum on Iron Overload, Milan, Italy.
18th September 2006
DBA-UK were invited to send 2 representatives to the 2nd European Forum on Iron Overload, by Novartis. Alan Dewick, Deputy Chairman and Jane McCarthy, Patient Support Co-Ordinator, represented the group at this event, held in Milan, Italy. Following is Alan report into a hectic 36 hours on behalf of the group.
We both made it to Heathrow Airport in plenty of time and the flight was only 20 mins late taking off. Apart from the fact we were sat in the middle of a group of teenage boys, obviously on their way back from a school trip of some kind, the flight was uneventful (all be it noisy). When we got to Milan we identified the driver waiting to collect us, but then had to wait a further 45 mins while the last person in our group got her bags from a baggage reclaim that wasn't working. (just taking hand luggage has its advantages). Eventually we identified her and took a mad-cap drive (typically Italian) into the city centre, which was MILES away. The hotel couldn't find Jane's booking but eventually realised she had to be the Charles McCarthy they had on the system with the Novartis group. We eventually got to our rooms about midnight, local time. Although there was a salad waiting for us in our room, I felt a seafood salad that had obviously been sitting there for 4 or 5 hours was a bit risky.
Jane tells me breakfast was as disgusting. I am glad I just turned up at the conference room and had a coffee. The conference was a bit rushed. Too many topics and not enough time for all the questions people raised. Looking at the delegates list it was heavily skewed towards thalassaemia and specifically towards The Thalassaemia Society of Greece. However we identified the German DBA group and have exchanged details. She is friends with the woman who is setting up an Italian DBA group but who was not at this meeting because of illness so we can hopefully begin some international networking.
Although DBA got a number of mentions as an example of a rare anaemia there was little technical information that was relevant to us, although some of the more general things (like the next oral chelator being developed) were of interest and prompted some unsuccessful research when I got back. Watch this space for breaking news the moment we get it.
Fiona Turner from Novartis made a point of looking after us and introduced us to the other UK groups who were there. The last 2 sessions were on forming/growing a support group and raising awareness of your rare condition, which I really wanted to take part in, but couldn't because we had to leave early to make sure we caught the flight back. Typically we made it back to the airport in record time, the flight was delayed and we all sat around bemoaning the fact we missed the best bit. Fiona has promised to correct this for next year.
Once we got onto the plane the fun really began with a further hours delay while they unloaded all the baggage, checked to find the extra ones that shouldn't have been there, discovered they only existing on their paperwork, not in real life and reloaded everything back onto the plane. Security is top priority I know – but that was ridiculous. After we landed it took another 10-15 mins for BAA to turn on the automatic docking equipment to attached the ramp to the plane. Jane eventually managed to get home about midnight and I ended up catching the last train home from Victoria and eventually crawled into bed about 2.45am.
Although the Forum itself was of limited interest we have made a number of useful contacts and have agreed with other UK groups to meet up together and do our own, mini version, just to give us a chance to network. This will probably be the best thing to come out of the whole day.
Alan Dewick. Deputy-Chairman & Information Officer
